Announcement

Collapse
No announcement yet.

Welcome to the Transverse Myelitis and Atraumatic SCI forum

Collapse
This topic is closed.
X
This is a sticky topic.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    What kind of pain do you have and where is your syrinx? A lot of doctors have acted as though I was crazy when I decribe my pain or symptoms.

    Comment


    • #17
      I'm new to this forum and this ailment... Just diagnosed with C4/C5 stenosis and scheduled for fusion December 7th here in Austin, Texas, USA. I'm a 55 y/o teacher with 6 y/o triplets, previous compression fractures of T-12, L-1,2,3; also a Retired Marine and Volunteer Fire Chief. So much for King and country. Does tension work better than fusion? Does fusion fail [ 50%?] as high as I hear? Do I have any other options? Thanks!

      Chief Don

      Comment


      • #18
        Originally posted by Chief Don
        I'm new to this forum and this ailment... Just diagnosed with C4/C5 stenosis and scheduled for fusion December 7th here in Austin, Texas, USA. I'm a 55 y/o teacher with 6 y/o triplets, previous compression fractures of T-12, L-1,2,3; also a Retired Marine and Volunteer Fire Chief. So much for King and country. Does tension work better than fusion? Does fusion fail [ 50%?] as high as I hear? Do I have any other options? Thanks!

        Chief Don
        Bad day for a Marine to have any work done on him. I, personally, would get a second opinion from some place like Baylor before fusing if there is a 50% failure rate. I just hear pain stories afterward. I hope Wise will step in here because I believe some surgeons are now treating some stenosis cases differently. If you have insurance primary to Tricare then Tricare should pick up any extras the primary doesn't for the second opinion. Getting a statement of non-availability also should not be a problem right now.

        Go Army!
        Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

        Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

        Comment


        • #19
          Originally posted by ev50
          Hi Zoey,
          Thankyou for your info, and I would be interested to know how you go with your neurologist, and how you cope with your condition. I found a lady in Queensland, with a Thoaracic Syrinx, who was running an information session on SM for disability week. Please keep in touch, I am still learning the computer and it takes a while for me to work this posting business out.
          All the best
          Evelyn.
          Hi EV,
          Am new to this but was just reading your statements. I have chari 1 syringomyelia, first diagnosed late 2001, after complaining to doctors for about 10 years. I had 8 operations(due to complications involving meningoceles) and now am aparrently stabilised (surgically that is), although symptoms seems to be worsening, which I don't understand. However, the point I am getting at is that after going through 6 operations before one neurosurgeon admitted defeat, I was referred to another Neurosurgeon who was in the process of moving to Brisbane. She stabilised my condition from a surgical point of view (so far), so if the day somes when if you do need surgery her name is Doctor Marianne Vonau, and she is at the Royal Womens Hospital in Bris.
          As for me, am in England, and am trying to PE teach however, it seems my body has other ideas.Am due to see a neurologist next week in the public system over here, but am not holding my breath.
          Hope things go well
          Angela

          Comment


          • #20
            wise young ''transverse myelitis''

            Hi i am a 29 year old female i came across this web site and wanted to see if u can help me make some sence out of this whole thing,feb,13,2007 i had gotton rear ended in a car accident went to the ER got cat scans-x-rays every thing came back great. ok so i got home and was sore which is normal for being in a car reck, 2weeks later i was at work i work as a cashier so it is no hard work and i got the worst pain in my legs,back ,toes , so i went home and had my husband put pressure while i was laying on my stomach ,i finally fell alsleep and when i woke up the next morning i was completly numb from my waste to my toes tingleing-needleing feeling very scary so i made a doc appt.and he insisted go get a MRI and i did for the lower spine it came back and nothing! ok so i insisted for me to go and see a neurologist he said ok went there yesterday which was the 16th of march and he took it very seriously told me to go to the ER ASAP!! and get a MRI of the C and T spine with/without contract and admit my self saying he thinks it is transverse myelitis ok i am really worried i might die what is it and could the car accident made this happen for me? or is it a desease that i was born with? i have no clue i need all the input i can get.
            HELP!!!!!!
            thank you...brandy

            Comment


            • #21
              Originally posted by Bhaskar
              Respected Dr. Young,

              I am suffuring from TM since May. 2003. I have only one question is there any treatment avilable today that can restore me to my previous state ?
              what are your symptoms? i think i have tm also! i woke up one morning after a painfull night and a 2 week old car accident and was totally numb from my waste down to my toesand feel myself go to the bathroom barely walk even i will hopfully find out today i have allready 2 MRI ,cat scans,x rays wtf is going on

              Comment


              • #22
                Originally posted by happygirl6468
                What kind of pain do you have and where is your syrinx? A lot of doctors have acted as though I was crazy when I decribe my pain or symptoms.
                omg mine did to it was so bad i had to tell the doctor what i wanted (MRI CAT SCANS X RAYS) i was like wow do u even care? now the neurology thinks i have tm- transverse myelitis, but 3 weeks ago it was nothing to him-my doctor-

                Comment


                • #23
                  Snowy, no one dies of TM if they are in the hospital and being treated at least not from the waist down. You would have to have an allergic reaction to a drug or have it move up to the muscles you breathe with and that is also treatable. TM has many causes so you may want to read more at myelitis.org . If you haven't gone to the ER yet, GO! The sooner the medications can begin the more likely you'll have a light case.
                  Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                  Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

                  Comment


                  • #24
                    You have to take responsibility for everything, including the doctors you see. If they are no good, then get second opinions. I personally believe that although Doctors obviously care, they are often too rushed/overworked to do things properly, so become the expert yourself.
                    Last edited by Sue Pendleton; 07-01-2007, 11:04 PM.

                    Comment


                    • #25
                      This is my 4th year after a TM attack at the T7. After a couple of months I made a 80% recovery, but now I feel that I am loosing some mobility, because of pain around the right side abdomen . This feels like a 'stitch' as happens if one runs, I have had IBS for years off and on, and also Fybromyalgia.
                      A couple of medical practioners have given me their opions, one said it is the IBS, one said it could be the facia muscle system now stiffening. It has been suggested that I have all the IBS test again, Barium mells and Xrays, it dosnt feel like the IBS more like the Fybo, and I am wondering if the TM could have changed the muscle control of this area over the last year? and How could this be investigated? and treated.
                      I have also and odd body temp sequence, I am hot most nights but my temp drops to c35.5 at many parts of the day. I take' ordinary' pain killers.
                      as required.

                      Comment


                      • #26
                        Father in-law just diagnosed with TM

                        About a month ago my father in law started having back pain which slowly increased and included numbness/lack of control in his hands then legs. After several ER and doctor visits for this he was finally admitted to the hosp with a diagnosis of idiopathic transverse myelitis and put on a methylprednisone drip. Symtoms seem to have improved slightly after 3 days, but he still cant walk and will be discharged in the next week to a rehab facility, he's 78.
                        My question is, does anyone know of a good in-patient rehab facility in the south florida, west palm beach, area ? Also any nuerologists specializing in TM that he may get further advice from?

                        Thanks for any input.

                        Comment


                        • #27
                          New Member

                          Hello,

                          I was diagnosed with TM 3 years ago, after losing all feeling in the lower half of my body. It returned 3 years later, almost to the day, this time in my arms. I have a great deal of nerve damage, and tons of spasming, as I'm sure many of you do, as well. However, today, I was also diagnosed with osteoarthritis of the spine, and I am wondering how this new piece will fit into my already abnormal puzzle.

                          Are there others out there who have this combination as well? How will one affect the other? Any input will be greatly appreciated.

                          Thank you.

                          Comment


                          • #28
                            I'm in North Florida, Disney area, and I have had great treatment at UCF in Gainesville. They are quite a trek, even for me, but they helped me with my second occurance when no one else could. Ask your father's neurologist about it, the medical school was crawling with brilliant minds all working together to help me through the TM. Best of luck.

                            Comment


                            • #29
                              Hi ... Pirate Mommy ... are you answering your own question or ... ?

                              I have TM. I'm afraid I'm not familiar with anyone having both illnesses, although long term paralysis (in my case from TM) can cause bone density loss.
                              Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                              T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                              Comment


                              • #30
                                name roy seen lots of doctors in arkansas but scar tissue is causing lots of pain after surgery one pain doctor said he new all about it pts come to fine out he had one pts and she turn to street drugs and he let her go i am still trying i can walk some but not to much i give out easy

                                Comment

                                Working...
                                X